After vomiting black tar and passing it in the Summer I was given an emergency Gastroscopy which found I had lots of polyps. For months all I could eat was yogurt and Ready Break. After contacting the PA Society I was given the name of someone at Royal Liverpool hospital and I saw someone with the same surname as the doctor whose name I was given.
He was ok but I fel him a little sceptical as I do have a lot of health issues. Today he gave me a Gastroscopy and said I had a lot of polyps and I had three biopsy's but he said my bloods all came back ok and I'm not bleeding in my stomach now. Im having a CT scan next week but he said that if my scan is ok we might have to 'let things be'? As I was groggy from the test I couldn't really ask him what he meant.
I've been having injections of B12 for a few years now but I have been diagnosed with inflammation of the bowel following my total hysterectomy 8 years ago. I do have boughts of diarrhoea and vomiting because food tends to move very slowly through my system and my doctor changed my meds but I got palpitations with them so went back to my old stuff.
Can they check intrinsic factor levels in your blood years after having injections and sublingual spray?
So fed up as the bleeding was really bad and my stomach hurts particularly if I eat meat
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Paulaw22
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I believe that IF can be tested even if you are being treated for B12D but not sure what that would achieve as a) its a very unreliable test and b) it only rules in/out one possible reason for malabsorption.
I'm really sorry that you are having the problems that you are having. It can be so difficult to think straight at times. Possibly if you wrote to the specialist and asked for some clarification, explaining that you weren't able to focus at the time they might be able to explain - or if you asked your GP to contact them ... though I know they often fob you off with nothing.
It may be that the frequency of injections just isn't enough for you - guess you know that already if you are supplementing with sublinguals ... or it could just be that the problem is something else - but I hope they do manage to find out what it is and you get a solution.
Just checked the info sheet I was given and it's given more clarity. Because this disease was only detected after my daughter was found to have it, she had started nurse training and kept fainting, I have suffered nerve damage and many other health issues. It's just so frustrating that everyone seems to have competing perspectives on PA
Start with finding out if people still think b12 deficiency affects the blood first.
Then find out if they believe what they are trying to prevent is fatal anaemia.
Then ask them where the neurological damage comes in and if they believe bringing b12 levels up to normal means all neuro damage has a) been reversed or, b) been prevented.
If they can't answer you clearly and definitively, then the real answer is they don't know what they are on with.
They cannot reverse the damage that's been done prior to my diagnosis. I read up on it and spoke to the lovely people at the PA society and because it looks like I may have had it since birth and when I was tested my GP said he didn't know how I was still alive! I think it's best to wait until I've had my CT next week and then ask the consultant when I see him after Christmas.
He does research on behalf of the Society and they believe in him so I guess I must be patient!
I have a form of myasthenia gravis. I cannot feel degrees of hot and cold. I also suffer a form of migraine that is linked to epilepsy and my eyesight is affected. I have AS and have damage to the nerves in my spine. I have had lots of benign growths and problems with my kidneys, liver and thyroid
I'm just trying to clarify the course of events...
... and since my main sympathy lies with you having to eat Ready Brek, because no one should have to do that...!
So, you had a b12 deficiency and an MRI and they diagnosed nerve damage resulting from the b12 deficiency?
How often do you get b12 jabs?
You've also had a diagnosis of myasthenia gravis - which I'm presuming they are distinguishing from the damage caused by the b12 deficiency?
I know now that you have the stomach problems - and I'm presuming that's why you went to see the guy at the Royal Liverpool?
What I can't understand is why he is sending you for a head scan for a stomach problem? Neither can I understand why the head scan (unless he suspects brain atrophy) relative to b12 deficiency.
Was the guy at the Royal Liverpool a private consultant? Most GPs won't send us anywhere ....
To be honest it's all been a bit higgledy piggledy. I've had things identified by scans ect then later when I was found to have severe PA I've been told that certain things 'could' have been caused by it. I also struggle to sleep and only feel tired when the sun comes up. I have to wear prescription sunglasses in bright sunshine because I will go to sleep and get migraines, I'm the same with bright light.
I have injections of hydroxy balim every eight to twelve weeks due to the migraine but I top up with the sublingual spray of the 'good stuff' once a week. I need more in the summer than winter due to longer daylight hours.
I was sent to the consultant by my GP because a Gastroscope investigation found lots of large polyps and a bleed in my stomach. I was constantly anaemic too but the sublingual spray seams to have helped but the stomach bleed has stopped now too since I've been taking the spray. I am still getting very large blood blisters in my mouth though which he is looking at. I should have put CAT scan I think. This scan is of my abdomen to check if I have any polyps there or bleeding.
Thanks for your concern Poppet11. I appreciate it.
Thanks for clarifying. Especially the scan bit which was throwing me completely!
Yes, right, well it has been higgledy piggledy, hasn't it. Thing is, you've ended up in same the spot that many people do, so let's try and sort out the wheat from the chaff.
You're having heap big problems with your stomach in addition to all the other stuff that may/may not have been caused by the b12 deficiency.
You've been to see the gastro who is interested in b12 and does some research.
Yet this same gastro is letting you pootle along on jabs every 8 -12 weeks despite you having the gut and eye problems.
The 8-12 week jabs have never been proven to either halt or reverse cellular damage caused by b12 deficiency.
So, why this guy didn't put you on more frequent jabs to help you, I'm not certain. Unless he is one of the people who is still rushing around asking 'why aren't patients treated with 3 monthly jabs?'
So I don't care who he researches for, the 'let things be' comment is not acceptable.
Secondly we know that low stomach acid causes a lot of b12 problems. Stupid question, I know, but has he tested the PH of your stomach acid?
This is only my take on things but it would seem that your b12 levels had originally been allowed to fall to the point where even the doctors had to admit you suffered permanent nerve damage (and believe me, they don't admit this easily!) Despite that they are still giving you standard maintenance jabs as if you don't have nerve damage.
Secondly you have the other concomitant condition.
Thirdly, you are having stomach issues. But you haven't (I don't think) receiving tests for them and which would also give a reason for your initial b12 deficiency, and neither are you receiving advice or treatment for the same.
I think that sums it up?
In your shoes - I'd have the scan. Then I'd get in touch with Acumen labs and get them to check your stomach acid PH. Tell your GP you want him to do the referal letter and then you will only have to pay £60 for the test. It's a spit test into a test tube so not a problem.
If that comes back as testing positive then you can discuss it with your doctor or gastro (rolls about laughing....they haven't got a clue!)
That's if I was walking in your shoes. I wouldn't treat myself for low stomach acid in case I hadn't got it because you've got enough stomach problems - but I'd find out if that was the underlying cause of both the b12 and the gut.
It's interesting about the 'low stomach acid thing' because they keep saying I've got a lot of acid and gastric reflux but when I had the Gastroscopy it showed loads of bile not acid!
Also my food takes ages to digest to the extent of have to have medication to move it through my system because I was getting diahorrea and vomiting due to it staying there too long. Will I ever get to the bottom of all this? I really don't think so. Two years ago I nearly died because an ENT consultant told me that my thyroid tumour was too small to cause me a problem when it was choking me to death! It was only through my daughter talking to a professor where she worked who was a throat lump specialist, that I was given emergency treatment. He couldn't bel I'd been treated so shabbily.
If you mention 'Bile' Marre will be here like a rat up a drainpipe.
Meanwhile I'll get my bit in.
Reflux can be caused by both high and low stomach acid PH. And you need to establish the exact level - doctors will tell you you have high acid simply because you have reflux. They don't even consider the reflux could be due to low acid.
I don't know if you are on any kind of antacids for the reflux but if you actually have low acid they can make the problem worse.
Get the scan, then get your acid levels checked. There is only one lab you can go to privately in the UK and they don't do it as standard on the NHS -
Interesting about the bile though - Marre will be in her element!
I think it would be interesting to find our what your stomach acid levels really are, don't you?
Then you could give them to your doctor. And then you could explain to him about low stomach acid (if indeed it is low) because they haven't got a clue.
My b12 deficiency wasn't being treated and I was having all sorts of problems. I had reflux too.
One morning I put a bit in a cup with water, had a couple of sips and went and sat at my pc.
About 5 or 10 minutes later I started to feel weird. You know when you get that woozy feeling and the saliva that says you are going to throw up? It came on very, very quickly.
I starting heading for the loo, but my legs started to go. My heart was pounding out of my chest and my vision went more blurred than usual. I made it as far as the sink - just. I threw up so violently it hurt and the only stuff to come up was the bicarb water.
I honestly thought I was going to have a heart attack. It was like I'd been poisoned. I've never had such violent vomiting from such a small amount of fluid.
My body just did not want that!
Later, I came to realise that at that point I probably had no stomach acid whatsoever.
I think my situation at the time, was extreme, but I never recommend they check levels with bicarb.
I think the pickled onions thing is really funny!
You can squeeze half a lemon into a cup and top up with water. Sip it and see if you belch. Don't gulp.
But the same disclaimer applies as with the bicarb - you do everything at your own risk.
Betain - I know many people who don't get on with it, myself included, even when they take it with pepsin. I think the story goes is that it is too powerful for people who have already had their stomach lining destroyed through years of PH imbalance. That makes sense to me.
I've got alkaline PH. Yet if I take betaine I get the most atrocious reflux.
You can have the private test done through Acumen labs (I'm not on commission!) but it isn't recognised in the UK. Thing is, you will know!
You can also increase stomach acid by taking 'bitters.' I find this works the best for me - although I have lemon juice a lot simply as a drink (with water!)
not heard of that reaction before, poor you! - then again I've not been on the PA forum for long
joined as Martyn Hooper at the TUK conference was ace, 'check B12 first' (I did with the Active test too & I may be low B12 as half a thyroid) but hubby is the real problem (..lol!)
- but he's dodged long-term PPIs (I hid 'em)
and more problems (IMHO)
I've seen about 'bitters' will go looksie further...
Re:" like a rat up a drainpipe.", I wish, I've now fallen twice down the stairs, second one rather embarrassingly in a public place, nearly took with me a table full of cups so it was bedlum! Can not go there again.., so I need to regroup a bit at the mo. More B12 will be tried, I'm busy feeding lots of family and friends, not something I normally do often so its exhausting and my brain has gone on strike. Thought bile was an acid..produced to digest food, particularly fat, but my brain has now even forgotten how to change an ink cartridge, need to find the instructions, thank you for the link to PDF, I'll print it for keep sake!
Three times yesterday I came downstairs and when I got to the next to last step I thought it was the last step, missed the last step completely and crunched down enough to break my ankle - Foot watching is very important in my world (and sometimes I forget!).
Three times in a row I did it!!!!!!
And then I went to the shops, even though I'd got my tremor/wobblies - and knocked a display off a stand!
I think the bile was just in the wrong place - minor hiccough.
Yep I think a certain shop does not want me there either, everything just fell off as far as I m concerned. But you have not seriously broken your ankle ? Wishing you a speedy recovery if so, knitting needle is good to scratch in between the plaster if you get an itch..
I just hate falling, as I fall like a bag of potatoes, I never protect myself, no arms out or anything like that, just like some one has pushed a pile of bricks, over I go still clutching my hand bag. By the time I know I'm falling its to late, hitting the ground by then. Its natural reflex to put arms out protect face, I am annoyed I do not do that..
No, I did not break anything - but was wondering why I didn't! How stupid to do it three times in a row.
It is silly the reflexes thing - some of my reflexes have got better. Things I could not do before, I can do now. I can catch and kick a ball very well now, but I couldn't before.
Other reflexes are terrible, but I don't know why. Also I don't know that they are bad until something happens and I haven't reacted normally - like you with your arms.
I am okay with stairs as long as I watch my feet - but if stairs have a bend or a turn in them, even if I watch my feet, I usually still fall flat on my face going up them.
Oh, and ramps.
You come out of a door and there is a ramp but you don't know it's a ramp. So I stomp all the way down them!
I also wanted to ask if anyone else had reactions to the B12 jab? Apparently I seem to be allergic to the preservatives in it. I used to get migraines when I had them every six weeks so it was reduced to eight to twelve weeks. But the last time I had it I came out in vitiligo type spots, so embarrassing (hope this answers your question too Poppet11)
Gosh, you have had a horrible time, Paula - my heart goes out to you. It strikes me though, that if you are allergic to something in the injections you should insist on a different kind of injection. I'm damn sure the NHS could rustle something up for you. They certainly shouldn't be cutting your frequency down because of it. That's a bit like saying they'll cut a cancer patient's chemotherapy because the preservatives don't agree with them - it's illogical, to put it mildly.
If it's any comfort, the B12 injections make me itch all over like merry hell and sometimes I get rashes on my wrists. But they clear up within a day or so - not like yours, I'm sure.
It really sounds like your docs are all getting lazy with you and writing you off. Perhaps if you are too tired to fight your own corner you could take an assertive friend or relative with you to consultations and get them to fight for what you want & need?
Yes that's why I joined the Pernicious Anaemia society they've been really supportive. I think the consultant is going to check out my injections after he's checked everything else.
It does seem like one thing after another.
I think because I've had so much they're sort of 'oh her again' ! Also I've found that a lot of doctors know nothing about PA. My GP sends the phlebotomist to training an info sessions cod he can't be bothered to go.
My daughter is a nurse and she has PA too and gets similar problems ie leg and nuclear pain, period problems, fatigue.
I've ended up with Fibromyalgia, ankylosing spondylitis, thyroid tumours, endometriosis, chronic asthma, gall stones, kidney stones, hiatus hernia, bowel inflammatory disease, migraine and hypo mobility syndrome, osteoporosis arthritis ect ect.
I do think you can improve your situation though - but I do mean 'you'.
In most cases it is the patients who gain the underpinning knowledge and then they sort out their own problems because they come to learn that they probably have a better grip on the subject than most other people.
Preservatives is a favourite topic of mine. What country are you in, what form of B12 are you taking and which manufacturer? Hydroxo in the UK contains no preservatives other than a small amount of salt and vinegar.
Hi that's quite odd because it was the PA society in the UK that do research ect that told me about the preservative in B12 and that we use the cheapest version due to high shelf life. I didn't just pluck the information out of the air.
Cyanocobalamin is the cheapest version of B12 but is not normally used in the UK. I have had two brands of hydroxocobalamin prescribed in the UK (Cobalin-H and Neo-Cytamen) and neither of those contain any preservatives other than the aforementioned salt and vinegar. I believe there is also a generic unbranded product used sometimes but I have never seen that. If the PAS is issuing a general warning about preservatives in UK hydroxo then I think that is extremely misleading. Do you not have the hydroxo so you can check the contents yourself?
No I have to have it done at my doctors they won't allow you to inject yourself. PAS are campaigning to allow people to inject themselves. When I told the consultant about the preservative issue he agreed. Apparently in America they give the other type not sure what it's called but begins with 'M' that's the one I have the spray of and that helps repair nerve damage but the one we are given doesn't and I read that from a UK medical paper. We have the cheapest one here due to its long shelf life, hence preservatives to make it last. Are you employed by NHS?
I am retired so not employed by anyone and have never worked for the NHS. I am slightly puzzled by your question.
My surgery is perfectly happy for me to inject myself at home but even when I had to attend the surgery to be given injections I kept the hydroxo at home and took it with me to the surgery. It's standard practice at many surgeries to issue a prescription for hydroxo which the patient collects from a pharmacy, keeps at home and takes to the surgery to be injected.
The "M" version you are referring to is methylcobalamin which is used in some countries and is available privately in the UK but I believe the most commonly used form in the US is actually cyanocobalamin. While in theory methylcobalamin may be a better form for repairing nerve damage, nothing with B12 deficiency is quite as black and white as that. Some people do not respond to methylcobalamin at all and find that hydroxocobalamin or cyanocobalamin are more effective. Both hydroxocobalamin and cyanocobalamin can be converted by the body to both methylcobalamin and adenosylcobalamin, the two active forms which the body actually uses.
Very little meaningful research has been done into the effectiveness of the various forms of B12 and statements like "only methyl repairs nerve damage" are really not helpful.
From the information I have been able to obtain this morning, the generic unbranded form of hydroxocobalamin used in the UK appears to be supplied by Amdipharm Mercury and contains no preservatives other than sodium chloride (salt) and acetic acid (vinegar) according to the Patient Information Leaflet. Perhaps someone who has been prescribed the generic version could confirm this?
I went on the NHS web site and that's what I found and consultants are telling me that too. The NHS say that some people do have issues with it and indeed as I have reiterated. I have watched videos by leading American researcher into PA, one of which was so badly affected by PA he was wheelchair bound and if you look on the PAS website that states that the U.S. predominantly use methylcobalamin as it has been found to be more effective. I use it to top up and it contains a different type of preservative. As they ALL do because it would not be cost effective and would go off. There are a few sources Portugal being one.
I asked you if you worked in the NHS because I thought you may be medically trained because you didn't seem to think that the trained doctors and researchers knew as much about PA as you did. I didn't mean it as an insult. I too have done a lot of research and joined the PA society and they have qualified consultants, one of whom is my consultant, he is a Professor in Gastroenterology. They recommended him as one of the best in the country as he does research into PA at the University. Personally using the top helps me and has improved my bloods for the first time in forty years. But it won't cure me nothing at the moment can as I was too long without treatment but they're working on it!
UK uses hydroxocobalamin, its more expensive than cyanocobalamin (used mainly in US). Hydroxocobalamin has a shorter shelf life than cyanocobalamin. Methylcobalamin is difficult to get in most EU, US but routeenly used in Asia. Also preservatives depends on the brand, not the type of B12 used, the ones prescribed in UK on NHS only contain what engels already said. I also get support to self inject from NHS GP, aqnd have been with PAS since 2006, you are not factual in your statements, sorry..engels has the details right.
Sorry I am not allowed to inject myself, just like many other in the UK. My daughter is a Staff Nurse and they make it very hard for her to get her B12. The PAS has just had a campaign to allow patients to inject themselves.
I have checked and Hydroxybalamin is known to cause side effects and has sodium acetate as well as the normal salt and vinegar. I do have problem with salt and use a little sea salt in cooking. I have had mouth blisters with salt on food in the past. People assume that products like salt and vinegar are fine for everyone but not necessarily. They are preservative too.
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Sadly I don't do FB - I so miss her on TUK too....she was a great help to me....
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